Tag Archives: global development delay

Samuel’s Dad and I are often told that we are very brave and strong with how we deal with Samuel and his condition. We aren’t really. We are just like any other parents. If you are a parent reading this, wouldn’t you do everything for your child? Wouldn’t you fight tooth and nail for them? Just because you don’t see me in tears, doesn’t mean I don’t, we don’t, have dark moments.

But together, as a couple, as Samuel’s parents, we are very strong. We have been together a long time, for about thirteen years actually. We met at university in my first year (we were flatmates) and that was that. We’ve always spent an enormous amount of time together. At the risk of sounding cheesy, we like each others company, we know each other so well it’s just so easy to be together. In some ways we are really quite alike, but then our differences make it work too.

I think I find our ‘situation’ easer to deal with than Sam’s Dad because it is my life 24/7. Whereas he has a busy, demanding job, Samuel is my job. My whole day (and night) is about him. I go to every appointment, meet every specialist and have to discuss Samuel’s condition weekly, sometimes daily. Very early on I got use to explaining ARX to people. I got use to having to tell people that Samuel has global development delay and is just like a very little baby. I also got use to being around fine and healthy children. ‘Normal’ children. Most of my friends have children now. Being at home all the time, I see them quite a lot and spend a lot of time playing with and admiring their little ones. There are times when it kicks me in the gut, you know, that feeling that Samuel will never do some of the basic things they can do. When they say ‘Mummy’ and ‘Daddy’. When they smile and giggle. But I’m ok with it. I accepted it a long time ago. I had to. But Samuel’s Dad doesn’t see our friends children as much, so he still has those moments. He still has that feeling of being kicked in the gut. But I think it’s getting a lot easier for him.

But we are a good team. We have formed our funny little bubble around Samuel and it’s very cosy. If you were a fly on the wall here you’d probably laugh at us. When we listen to music we often change the words to the song to make it about Samuel. We have a wide collection of what you may think are very obscure nicknames for him. We are just crazy for our boy.

I don’t think we could do what we do if our relationship isn’t how it is. Don’t get me wrong, we squabble, we annoy each other, we aren’t perfect. But we never really fall out. We make each other laugh. We hold each other when we cry. We would even give each other our last Rolo (well I might let him have a lick of it!).

Recent ramblings

WHAT DOES THAT MEAN?

NICU – Neonatal Intensive Care Unit (Sam spent 8 weeks there)
MIDAZOLAM – Samuel’s emergency medicine
JULIA’S HOUSE – Hospice which provides respite and play therapy (and lots of cuddles for Sam)
KETOGENIC DIET – Special diet which can help epilepsy
GASTROSTOMY – This is a button put into the stomach and all feeds and medicines can be given through it
CHLORAL HYDRATE – Medicine Samuel has at bedtime to help him sleep
SATURATION MONITOR (SATS MONITOR) – Used to monitor heart rate and oxygen in the blood
NASOGASTRIC TUBE (NG TUBE) – Tube that goes into the nose and down the throat and feeds and medicines can be given through it